The Unbroken Circle or: It's the Rifampin, Stupid

Submitted by katman on Wed, 2008-09-10 10:42

Last month I added Rifampin to my arsenal again, after taking it twice a day for sixteen months and stopping it in Jan., 06. A few things have happened since I started Rifampin a few weeks ago. I decided I should set them to paper while I am lucid (so to speak).

I have nothing dramatic left to recover, which in itself is rather dramatic, considering the nature and usual outcome of our disease. Shortly after downing my first Rifampin, I developed vertigo, which was present in 04 and 05 when I took it, but I was so foggy and spent so much time horizontal that I didn't notice it as much (indeed, I didn't notice much, then). It is reduced to a fraction of its previous presence - but it is there all the time. The fact that it has been three weeks today since I had surgery to begin reconstruction after a bilateral mastectomy last January may or may not have anything to do with the impact of Rifampin, which I started on the same day. Richard said "Your body has been hit with a lot in the past year." My feeling is that I am 68 years old, have MS and cancer, and got implants. THAT, my friends, is optimism!

One evening last week, while taking my PM pills, I looked at one and it didn't look as big as usual, so I swallowed it - whole. Then I swallowed ALL the others,including the ones that I normally chew. In the first part of 05 I NEVER took a pill or ate food unless Richard was there, because I was having trouble swallowing. He had to do the Heimlich Maneuver on me twice during that time. 04 and early 05 was the lowest time of my life, without a doubt. So now, suddenly, after almost four years, my swallowing has taken another leap forward. I may even try a Jalapeno, which I ate regularly as a young person, but has, in even tiny amounts, choked me for years now. It will be an interesting pulse, my 53rd. I am hoping that the vertigo and balance regression are symptoms of needing a pulse. From what I can remember about the impact of Rifampin four years ago, this is charter two or, in view of the ups and downs of the intervening years, the final chapter, or, at the very least, the second of a trilogy. So, like this sentence, it goes on and on - or maybe not.

Rica, it is so good to hear your progress (and regress) Rif can work wonders but I know from my own experience that it can traumatic at time.   It seems to set you up for a hard pulse or at least that is my experience, but I have noticed definite steps forward after. 

Regaining your swallowing reflexes is so good, it makes eating and swallowing a pleasure again instead of a scary experience.

53 pulses that must be a record.   I don't think anyone can top that.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Rica, As always, you never fail to impress. You reinforce my belief that cpn gets hit in different places at different times, til we wipe it out.

I'm dragging my feet on rifampin due to some personal issues, and keep telling myself 'soon, soon'.   So, I'm living vicariously through you right now.  My life is just nowhere near as, um, 'stimulating' as yours is these days.  Image removed.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Rica,  Yours news is terrific!  I have a question, though.  About the it a sensation of your surroundings spinning, or is it imbalance?  If it's imbalance, it could be a sign of balance correction.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce, it is definitely both. When I make a move with my head, the world is sure to follow - follow being the key word here. I can't make any sudden or fast move, becausse my surroundings are behind my visual field. Strange!

Also, this pulse is impacting my walking, nothing like the degree 3 or 4 years ago - or even 2 - but it gives me hope that I will see more lightness of my step in 5 or 6 weeks. I recognize that I am greedily hopeful, but when I look back 2 1/2 years and remember saying that I would be thrilled if my improvement stopped at whatever level I had achieved, any label we attach is ok.

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am